INFORMATION ABOUT THIS DOCUMENT This document describes the National Center on Sleep Disorders Research. You may order the published version from: NHLBI Information Center P.O. Box 30105 Bethesda, MD 20892-0105 (301) 592-8573 (voice) (301) 592-8563 (fax) nhlbiic@dgsys.com (Internet) Introduction The National Center on Sleep Disorders Research was established by law in June 1993 to combat a serious public health problem. The Center seeks to improve the health of Americans by supporting research, training, and education about sleep disorders. The Center is situated within the National Heart, Lung, and Blood Institute, part of the National Institutes of Health (NIH), in Bethesda, Maryland. Scope of the Problem "By any measuring stick, the deaths, illness, and damage due to sleep deprivation and sleep disorders represent a substantial problem for American society." --from Wake Up America: A National Sleep Alert, 1993 Report of the National Commission on Sleep Disorders Research About 70 million Americans suffer from a sleep problem; among them, nearly 60 percent have a chronic disorder. Sleep problems affect men and women of every age, race, and socioeconomic class. Despite this widespread prevalence, most cases remain undiagnosed and untreated. Each year, sleep disorders, sleep deprivation, and sleepiness add an estimated $15.9 billion to the national health care bill. Additional costs to society for such consequences as lost worker productivity and accidents have never been calculated. Moreover, the contribution of sleep disorders to such serious problems as heart disease and stroke, which kill and debilitate thousands each year, has not been quantified. A Wide Spectrum Sleep disorders and disturbances of sleep comprise a broad range of problems. Even a partial list adds up to 70 conditions. Some of the major problems are: Sleep apnea Narcolepsy Insomnia Parasomnia Jet-lag syndrome Disturbed biological and circadian rhythms Sleep disturbances associated with such diseases as neurological disorders, heart and lung diseases, mental illness, and addictions The magnitude and prevalence of many sleep disorders are difficult to assess. The most studied sleep disorder is sleep apnea, a cessation of breathing during sleep that is a major cause of excessive daytime sleepiness. It is the second most common sleep disorder after insomnia and affects about 20 million Americans. Sleep apnea is associated with high blood pressure, coronary heart disease, heart attack, pulmonary hypertension, congestive heart failure, stroke, neuropsychiatric problems, mental impairment, and injury from accidents. Each year, sleep apnea accounts for about $42 million in hospital bills. The costs for diagnosis and treatment of this one sleep disorder could reach $60 billion by the year 2000. Other startling statistics about sleep disorders include the following: About 25 percent of American children aged 1 to 5 have a sleep disturbance; an estimated 250,000 people suffer from narcolepsy; more than 50 percent of Americans aged 65 and older have a sleep problem; and disturbed sleep is among the reasons most frequently cited by caretakers for institutionalization of older Americans. Because the prevalence of sleep disorders appears to increase with advancing age, the graying of the US population suggests that we will encounter an increasing public health burden in the years to come it is estimated that nearly 80 million Americans will have a sleep problem by the year 2010 and 100 million will have one by the year 2050. Milestones Despite their heavy toll, sleep disorders only recently have been recognized as a significant public health problem. To begin attacking this problem, the US Congress in 1987 passed legislation requiring the NIH Director to develop a plan for coordinating sleep research within the Public Health Service, part of the Department of Health and Human Services. That first step led to formation of an NIH coordinating committee on sleep disorders. In 1988, the Congress created a National Commission on Sleep Disorders Research to conduct a comprehensive study of the status of current knowledge and research on sleep disorders, including the resources (such as manpower, health care facilities, and social programs) available for addressing sleep problems. The Commission was also charged with developing a long-range plan to promote sleep disorders research. In January 1993, the Commission delivered its report to the Congress. Wake Up America: A National Sleep Alert identified sleep problems as a public health crisis and recommended a number of countermeasures, the most crucial being creation of a national center for sleep research to lead a Federal initiative against sleep disorders. The Commission stressed that a clear organizational focus was necessary not only to coordinate and manage such an initiative, but also to be accountable for its results and to ensure wide dissemination of research findings to health care professionals, patients, and the public. In June 1993, President William J. Clinton signed Public Law 103-43. Title IV of that law establishes the National Center on Sleep Disorders Research. Missions and Goals The National Center on Sleep Disorders Research was established to conduct and support research, scientist training, dissemination of health information, and other activities on sleep disorders and related concerns. The Center also is responsible for coordinating sleep research activities with other Federal agencies, and with public and nonprofit organizations. The Center fulfills its goals by serving four key functions: Research, training, technology transfer, and coordination. Research Sleep disorders span many medical fields, requiring multidisciplinary approaches not only to treatment, but also to basic research. The Center is working with neuroscientists, cellular and molecular biologists, geneticists, physiologists, neuropsychiatrists, immunologists, clinicians, pulmonary specialists, cardiologists, epidemiologists, behavioral scientists, and other experts. These scientists and health professionals are conducting basic, epidemiological, clinical, and behavioral research, as well as studies on prevention and health services. Research is supported by the NIH and other Federal agencies. Examples include studies on: The genetic component of narcolepsy Neural mechanisms that regulate the body's respiration, circulation, and temperature during sleep The role of the upper airway in sleep abnormalities, including the use of sophisticated imaging devices to assess obstruction The possible role of sleep/wake cycles in triggering heart attacks Cholesterol metabolism and diurnal rhythms Sleep quality and the management of insomnia among middle-aged women The prevalence, natural history, and genetic basis of respiratory disturbances in sleep among men and women The impact of sleep and sleep deprivation on immune function Surgical and other treatments for obstructive sleep apnea The cardiovascular complications of sleep disorders Those efforts represent only a beginning in the struggle to understand sleep disorders. Many other areas of sleep research urgently need investigation. These include: the basic functions of sleep; the genetics of sleep; the epidemiology of sleep disorders among minorities, women, and the poor; natural history data on normal and disrupted sleep throughout life; the neurobiology of excessive daytime sleepiness and motor control; sleep deprivation; and the role of sleeping pills in treating insomnia. Training Today, questions about sleep are far more numerous than the cadre of scientists available to answer them. In the absence of trained investigators, no new cures or treatments can be found. Training researchers in sleep disorders is rigorous and time- consuming--the skills and knowledge needed span many fields. The Center seeks to support and promote formal training programs on the doctoral and postdoctoral levels. It also plans to expand existing career development paths and create new training programs for scientists in sleep disorders research. These opportunities would include the formation of individual and institutional training awards for young and advanced investigators, particularly established scientists wishing to move into this challenging area. Technology Transfer Scientific advances do not improve health unless they become useful medical practices. In this area the Center seeks to develop new ways of ensuring that research results lead to health benefits. The Center expects to: Educate health care professionals about sleep and sleep disorders, with a special emphasis on reaching primary care physicians (who are the first line of treatment for most Americans), nurses, and clinical psychologists Encourage medical schools to add sleep disorders to current curricula Rapidly deliver new findings on prevention, diagnosis, and treatment to clinicians Work with leading experts in sleep and related disorders to develop professional guidelines on prevention, diagnosis, and management of, and referral for, sleep problems Sponsor continuing medical education programs for health professionals Since many sleep problems remain undiagnosed and untreated, the Center also seeks to improve Americans' lives by increasing public awareness of such issues as healthy sleep behaviors, the ramifications of sleep deprivation, the nature of sleep disorders, and the ways to obtain treatment for a sleep problem. Plans are to: Produce patient and public information materials Serve as an information resource on sleep and sleep disorders Educate policy makers, employers, and those in the transportation industry about the hazards of sleep disorders and deprivation Facilitate efforts to incorporate information about healthy and disordered sleep into curricula used in elementary and secondary schools, colleges, and driver education courses Coordination The Center coordinates the Federal Government's efforts on sleep disorders and works closely with other public, private, and nonprofit groups. It collaborates with such NIH components as the National Institute on Aging, the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, and the National Institute of Child Health and Human Development, and other Government agencies and departments, including the Centers for Disease Control and Prevention and the Departments of Transportation, Defense, and Veterans Affairs. The Center is developing plans for sharing information among these groups and for encouraging their cooperation, especially in crosscutting areas. This process eliminates duplication of effort, allows the most efficient use of limited resources, and ensures that important research gaps are identified and effectively addressed. Further, the Center is seeking to improve communication among scientists, policy makers, and health care professionals to accelerate the speed of scientific discovery and the dissemination of findings to health professionals, patients, and the public. Center Operations A 12-member Sleep Disorders Research Advisory Board provides guidance for the Center's activities. The Center and its Advisory Board are collaborating with scientists and the public, including voluntary groups, to develop a comprehensive plan for conducting and supporting sleep disorders research and for setting goals for educational programs. Much of this collaboration occurs through various workshops and conferences. Additionally, the Center works with other Federal agencies to collect data, conduct studies, and disseminate public information about sleep disorders and their effects on society. Questions and Inquiries Can Be Directed To: National Center on Sleep Disorders Research Write to: The NHLBI Information Center P.O. Box 30105 Bethesda, Maryland 20824-0105 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Public Health Service National Institutes of Health National Heart, Lung, and Blood Institute February 1994 .